A view from the autism spectrum. Updates Mondays, Wednesdays, and Fridays

Friday, September 23, 2016

A Hostile World

Last week I read a book called The Reason I Jump, by Naoki Higashida. I reviewed it last week, but it got me thinking about how I perceive the world versus how he perceives it, and other people tend to perceive it. Mr. Higashida loves nature. It makes him happy to be outside amongst the sounds and stillness of nature. And I simply don't get that, because while outside can be nice, it also tends to have mosquitos and other bugs, and I can't stand having things crawl on me. And things will crawl on me, without trying to be rude or meaning any harm. It's just what they do.

That comparison reminded me that a lot of things are like that: I suffer a lot of unintentional abuse, every day, with no particular recourse. And often, without anyone noticing. So in the interests of having people understand that a bit better, I'm going to try to enumerate and describe things that make the world kind of hostile to me and others on the spectrum.

The Very Light Itself

Perhaps one of the first things noticeable on waking up, sunlight. Sunlight is warm and comforting, right? Sometimes, yes. And sometimes it stabs my eyes when I go outside, causing physical pain until I adjust to the brightness. This can take minutes. Ever had a big LED flashlight shined in your eyes on accident? Or walked out of a dark room into full sunlight reflected off fresh snow? It hurts. For you, probably momentarily while your eyes adjust. Imagine you had to deal with that every day.

I used LEDs as an example above for a reason, as well. LEDs are painfully bright to me. It was fine when they were covered with glass as in smart phones, or tiny and buried in TV screens. But now we're using them in lightbulbs and flashlights and lanterns, and those hurt. Never mind the artificiality of the light, such that it makes it hard to see with them anyway. They're simply too direct, too bright, too focused... too something. They hurt, like needles directly to the eyes.

I tend to scowl and scoff at people that use vanity LED headlights for this reason. Standard headlights are mostly white and yellow light. But that's not good enough for some people, so they opt for these horrible bright bluish-white lights that blind me whether they're using high beams or not.

For some people on the spectrum, it's even worse. You see, LED light bulbs flicker. The flicker isn't visible to most human eyes, but to some people, it can make a room very unpleasant. Even one flickery light in a room can destroy my focus. If all, or even most, of the lights in the room were like that, can you imagine trying to pay attention to anything? If someone was trying to show you something, and the whole room kept flickering? And meanwhile they can't imagine why you're squinting and getting a headache.

Sound And Fury

Low rumbling noises, like the ones my car makes and the passing of trains or other cars, don't particularly bother me. It helps that those are often quieter and further away, I suppose. But high pitched noises, especially shrill ones, are very troublesome. I can't filter them out. They press in on my skull, demanding my attention, and sapping at my energy. Children, sirens, the squeaks of unoiled doors or chairs, the backup noises of trucks and buses, all of these grate on my brain. Or in the case of sudden noises, stab it.

In my own apartment, which is one of the quietest places I frequent, there's the hum of the fans in my computer, the drone of the freezer and refrigerator, the creak of my chair, the click/tap/thud of each key I press on the keyboard, the occasional plunk or ding of an email arriving. Then you can also get the construction equipment outside, which frequently backs up or uses those bucket arm things, and that makes a high pitched beeping noise, both predictably and not, since I'm never quite sure when they'll back up or stop backing up. There's the school bus that comes through in the morning and the evening, and the shrieky children it picks up and disgorges. And the blasted music from some of my less polite neighbors, either from their cars or in their apartments.

In a place like the mall, there will be many more sounds. Chatter and bursts of laughter from shoppers, radios from mall security, the inevitable cheery/dreary mall music, sound effects from displays of goods, music blasting from specific stores, the shrieks of children and coffee machines... All at once, clamoring inside my head.

All of this has to be tolerated. It's irrelevant to whatever your current train of thought is, or your current conversation with a friend. Focusing on it would simply get in the way. Normal brains automatically filter out extraneous sounds, like the rumbling of your car or the music in the mall. On a good day, my brain mostly follows suit.

On a bad day, I hear everything with equal priority and must consciously dismiss it and purposefully ignore it. If I'm having a chat with a friend, my attention will keep getting grabbed away from their words by sudden sounds, or a snippet of conversation that I happen to catch.

Someone doing the dishes in the next room, or over the phone, is intensely painful to me. Chris, my fiancee, is thankfully very sensitive to this sort of thing, but even he forgets sometimes. Even if he hasn't forgotten, he can hardly stop doing dishes forever, or even save them until I'm not home. It's simply not practical.

"Exhausting" is one way to put it. "Painful" is another. It's not just the loudness of things. It's the complexity, the number of noises around me. I used to attend a gym that was a veritable cacophony of sound, from people to exercise machines to TVs. It was so bad that I had to wear noise-canceling earphones, which I still bring with me everywhere just in case. Otherwise it was impossible to focus on bludgeoning myself into exercising, even with the surprisingly motivating exercise app I had.

The Smell and Taste of Things

I am fortunate in that I mainly grew out of my childhood eccentricities when it comes to food. But my parents could likely give you a volume or two on how difficult it was to get me to eat vegetables. I think most parents have some trouble with it, but I remember a great deal of aggravation at mealtimes. Eventually we had a list of things I didn't have to eat, which was quite literally a Post-It note on a cupboard, and I had to give Mom warning before I changed it. I think it was 10 things, or something like that, but it may have been less as I aged. But even with that, there was great exasperation because I couldn't be coerced into eating stuff. I would simply sit there and scowl.

I'm not entirely sure when or how I grew out of it, but I try to make a point of trying things at least once, preferably every few years or so just to make sure my taste buds haven't changed. They usually haven't.

When I read about kids that won't eat certain foods, or won't eat most foods, the words that often come up are texture and flavor. The latter is obvious: if you puree kale, it's very acrid and bitter and overall horrifying (I may be biased against kale). Some people just can't stand the taste of certain vegetables or other foods. Something about it just rubs them the wrong way and so they don't like to eat those foods, or just won't.

But texture is an entirely different ball game. The mouth, and especially the tongue, have a lot of touch receptors. Some things, bumpy or crunchy or squishy or gooey, are intolerable to people with sensitive mouths. You know how at fairs, they'll sometimes have a mystery box. You stick your hand in the box full of something gross, and if you guess what you've just put your hand into, they'll give you a prize? Sometimes it's only a bowl of spaghetti or lumpy mashed potatoes, but sometimes it's live worms, wet cat food, or chicken intestines. But either way, you've just stuck your hand into something that feels gross, and now people are expecting you to be okay with it, and even make guesses as to what it is.

I don't know about anyone else, but I always found that box game disgusting and horrible, even if it was just spaghetti. It's a texture you weren't expecting and weren't prepared for, and it's often greasy or sticky or something. An unpleasant texture is something like that, like sticking your hand in that box, but every time you have to eat that food. It might be the same texture every time, but it's always unpleasant.

Smell, on the other hand, is something I continue to have problems with. My family wasn't much into cologne or perfume or scented candles, so growing up, I only had occasional problems with strong smells. As an adult, I'm finding it a trial to walk past the scented candle aisle in grocery stores, or past Bath and Body Works, or any other places that specializes in scented products. I have to hold my breath, or flinch as my nose is assailed by a sledgehammer's impact of smells, all mingled together and indistinguishable.

My sense of smell, is, as far as I can tell, excellent, in that I can pick out individual ingredients in a recipe from merely smelling it. Olive oil has a certain smell, as does tomatoes of various preparations. Soy sauce, too, and chicken, steak, and bison. So throwing a dozen or two floral, fruity, and spicy scents at it, all at once, is confusing and stunning. The stronger the scents are, the worse it is. Needless to say, I avoid shops like Bath and Body Works like the plague, unless I have excellent reason to do otherwise.

Even a Gentle Touch

Temple Grandin's childhood inability to tolerate hugs is, I think, fairly well known at this point. There was simply too much sensation, such that rather than enjoying the hug as the gesture of affection and familiarity it was, she would stiffen up and pull away. It took some ingenuity on her part in college, and a lot of patience, before she was able to tolerate hugs. She quite literally had to invent a "squeeze machine," basically a machine that put pressure on her as tightly or as softly as she wished, and use it many many times to accustom herself to the sensation. In the end, she was able to give and receive hugs.

This is a familiar story when reading parents' accounts of raising their autistic children, with the kids freezing up or crying, or even refusing to touch or be touched. The sensation is just too strong and overwhelming. Something like the difference between someone showing you a picture, and shoving it right at your eyeball.

Similarly, some people on the spectrum feel touch as pain. For years, I'd assumed I wasn't one of them. Then I happened to notice an instance of minor pain when my fiancee was stroking my arm. It wasn't a sharp, attention-grabbing pain. It wasn't an ache. It was simply the sensation of being touched, but with a dull overloading factor. Which I hadn't realized until just then, but that did translate to pain. It wasn't a loud kind of pain. It simply, quietly, hurt. I got the sense I'd kind of been ignoring it for years.

So for me, apparently, light touches can hurt. To my great and abiding irritation, that isn't all. I am immensely ticklish, basically all over my body. I have no memories of enjoying being tickled, so every successive incident just annoys me further. It doesn't help that it often happens at doctor's appointments, when they need you to hold still so they can examine you, or on accident while trying to relax on the couch with my fiancee.

Other Senses Exist

Contrary to most textbooks, there are 10+ senses that the human body has access to. I'm not as familiar with them since I didn't know they existed until recently, so I'll cover them only in brief.

Balance and Kinethetic Senses: Your senses of body movement, where your limbs are in space, direction, acceleration, etc. All that is bundled together, and if it's out of whack, you get all sorts of fun things. The book I read, The Reason I Jump, talks about not being able to feel yourself in space. The author jumps, at least in part, because it lets him feel himself in space. Other people spin, rock, run in circles with their heads tilted at an angle so they feel balanced, or do other things. If this sense is off, it can really disorient you. Imagine always feeling off-balance when you're sitting in a chair. Could make it hard to pay attention in school.

And of course one of the classical Asperger's symptoms is a mild clumsiness and odd walking gait. I have both of those, though I have improved markedly as I aged. I continue to trip over flat surfaces, but rarely, if ever, fall down after tripping. Perhaps partially due to the roller skating lessons I had in my teens.

Temperature and Pain: These don't technically go together in a scientific sense, but they're both extra-touch sensors to me, and no scientist has complained to me yet. I've heard from parents whose kids don't seem to care if they touch a hot stove. I personally get all kinds of miserable when I get cold, and despite my layer of protective blubber, I get cold quickly.

Painwise, everyone has a pain tolerance (how much pain they can handle) and a pain threshold (how strong pain has to be before you notice it). Even in neurotypical people, this varies. In autistic people, this can vary extremely widely, from being seemingly impervious and oblivious to pain, to shrieking about even little pinprick. My personal experience varies. Some days I'm more oblivious to pain than others. In general, my pain threshold seems relatively low, but my tolerance is fairly high, given enough time. Sudden blinding pain hurts a lot more than a headache that starts out mild but works its way up to making me dizzy and sick to my stomach. (Why yes, I did find that out from personal experience...)

Internal Senses: Things like how full your bladder is, how much air you have in your lungs, and how hungry you are. Since messing up my gut bacteria with a ton of pop a half year or so ago, I've had issues telling how hungry I am. I'll have bouts of a minute of being murderously hungry, and then 15 minutes with my stomach telling me it has no problems whatsoever.

Like any other sense listed above, this too can be off-kilter. Some parents of children with autism report longer toilet-training, or delayed toilet training. Some people with autism forget to eat unless reminded, then they notice they're hungry.

So What?

Hopefully this has given you a bit more of an understanding of the challenges of being out in the world. One or two of these things could be classified an annoyance, maybe, but piling them all on simultaneously makes this exponentially more difficult. You'll note, too, that not a single bit of this touches on what I consider the core of an autism diagnosis: the lack of social intuition. These are simply sense-based difficulties that add onto that lack, making it even more difficult to interact in a normal fashion with others.

I have a friend who, many years ago, got annoyed like most everyone else does when a baby or small child was crying in a store. She assumed the kids were simply being brats. Then she had kids herself, and some of them were sensitive to these things I've described. After some reflection, she'd often look for bright lights in the kids' faces, or unpleasant sounds, or strong smells, before assuming the child was just being bratty. And fairly often, she'd find something that explained the child's distress.

I wish more people would be that thoughtful about their interactions with others. Most people have no way of knowing these difficulties I've described, and so I'm "reclusive" or "hard to get to know" or "unsocial." But most days it's a trial to go out for any reason. If even a tenth of the people I normally deal with understood that, my life would be a lot less anxiety-inducing.